A poster presentation at the ISPOR 2024 conference May 5-8 in Atlanta is set to unveil significant findings in chronic lymphocytic leukemia (CLL) management, integrating patients’ perspectives and healthcare resource utilization.

Led by Inspire researchers Deborah Kuk, ScM, Brian Chen, ScM, et al, along with Stuart Goldberg, MD, from Hackensack Meridian School of Medicine, Nutley, NJ, the study showcases the power of Inspire’s novel real-world patient-centered database.

CLL, one of the most common forms of leukemia in adults, is chronic in nature, with nearly 85% of CLL patients surviving at least 5 years.

The study aimed to merge experiences shared by CLL patients in the Inspire online community with treatment and healthcare resource utilization data, shedding light on the holistic cancer journey. Utilizing Inspire’s online community platform, researchers analyzed more than 32K posts from 11K CLL members. A subset of patients had linked open medical and pharmacy claims along with electronic health records (EHR), allowing for comprehensive analysis. The methodology employed a targeted review of CLL literature to establish a lexicon, followed by the utilization of large language models (LLM) to identify and categorize unmet needs expressed in user-generated posts.

Findings revealed that CLL patients actively engage in discussions regarding cancer management, chronic illness, and quality of life on the Inspire platform. Moreover, the integration of patient voice with medical data identified high rates of secondary malignancies, suggesting a cohort seeking additional information about long-term complications.

This study highlights the importance of integrating patient perspectives into real-world data analysis to comprehend the full impact of a cancer diagnosis.

View the poster presentation.